dx, some questions and dla.....

[verycherry]

Hi all

I posted here a while ago about my ds with ?cp and had loads of lovely supportive replies.

He was formally dx in October with spastic diplegia cerebral palsy which was as we were expecting. I was initially a bit euphoric as I had asked much earlier in the year if it was cp only to be completely dismissed, but remained convinced in myself it was. Then i started thinking about how he will be affected all his life, that we can't 'cure'(not that I want to change him) him but that physio/interventions etc will be a continuing part of his life etc etc. Its taken me a little time to get my head around that.

He has been referred on for lots of things, he had his legs cast last week for dafo's, they are being fitted next tues, he has a hearing test next wed and is referred for SALT, orthoptist and early years support team.

He is having his next block of physio in Jan and continues to use his kaye walker and gaiters at home. Also in Jan he is seeing consultant geneticist as he has cafe au lait spots which may indicate neurofibromatosis and is seeing the orthopod re: botox and is having an MRI. Oh yeah and I am having ds4 sometime around Jan 9th so not much going on....!!!!

Just have some questions if anyone can help? We initially refused the MRI as felt if he was dx on clinical presentation and management would not change then why put him through it. However his paed really pushed for it as there is ???? cause for his cp - I bled from wks 8-30 in my pregnancy but she feels that this is not significant this is the paed who also told he did'nt have cp....

She wants the MRI to exclude the possibility of there being a neurofibroma in the brain - if indeed he has neurofibromatosis, so we have agreed. My question is what do they use for sedation, he is 2.4 yrs? Also what are peoples experiences of botox and dafo's?

Lastly, I have applied for dla online and submitted the app last week, someone rang me yesterday for further info and said he would be making a decision that afternoon and I would hear within the week, all v good but I was slightly concerned about his knowledge.

He did'nt know what gaiters were or the kaye walker, he was slightly dismissive about ds's speech saying 'well he is only just past 2' despite the fact he has been referred for SALT and he only has single words which I can understand, noone else can. When talking about nighttime I was explaining that ds requires extra supervision as he has poor gross motor control and pulls himself up and falls out of his cot - he suggested putting something over the cot to prevent this in a lid-like fashion .

Anyway my slight concern is that he is making a decision on the dla award without being really aware of ds's needs/disability despite me being really explicit on the form and clear when I spoke with him. Anyone else have any issues with this?

Am just off out now but will check in when get home.

Sadly the DLApeopleare reallya dmin staff.

If you geta refusakl though do not panic, at elast half of allapplications IME get tuned down first time,many of us syuspect a system

When you next apply the easiest way is not to list symptoms (we've all done that trust me) but to offer direct comparisons becuase that is how DLA is asessed.....

'Unlike most children of 2.4, DS needs X to walk, without which he can only.....'

'DS'sspeech is X which differs from a typically developing child of his age because of....'

Can't answer the toehr stuff sorry (we're autism not CP) but thought that might help?

Will keep fingers crossed on the dla front for you, you never know until the letter turns up My dd3 had an mri at a similar age, she was given a general anaesthetic, she wasn't out for long, I think it was only a light one, she was completely back to her normal self by late afternoon. Can't help with anything else I'm afraid.

I think its hopeful on the DLA front actually - but obviously dont take that as a given, we've always had at least 17wks to wait for a cr@ppy decision. Ive heard on here a few times where its only been a matter of a couple of weeks with a very favourable outcome... so you never know.

DS5 had an MRI, he was 3.5y and had a general - came round too quick and screamed all the way from the scanner to the ward cos he didnt see me, only some woman he'd never met before . I think it would be very useful to have an MRI - that way you know exactly whats going on. Its a pain of a day, but you only need do it the once and then its over.

DOnt know about other things, we're autism here too.

Thanks for your replies.

Miss - 17 wks bloody hell that's awful! I certainly did nt expect to hear so quickly, it took me 6 weeks and 4 failed attempts to actually submit it online (note to self, next time do paper app) so was expecting a lengthy wait. Will post when I hear.

I don't know why I'm so twitchy about the mri, I'm sure he ll be fine, am glad to hear its not been a problem for others, just don't like the idea of sedation I suppose.

Hi, i was exactly the same. My DS had his MRi in august after initial dx of right hemiplegia. I really didnt want to put him through it but it was nothing to worry about and it has been extreamly helpful in my ds case.

He was sedated, cant remember what it was called, but it was a liquid medicine, he had to held a little whilst it was given but he was fast asleep in minuites. I on the other hand was very emotional, but nurses were fab. Had scan done and woke up 2hrs later. Although he was alittle drowsey after he was fine.
I am now glad we had the scan done as its helped all proffessionals and us understand exactly whats going on, its even given us some prognosis of the future.